Archive for the ‘ Leukemia ’ Category

Just a Quick, Short Update

I am back in the hospital. They found leukemic cells in my spinal fluid, so now chemo has to be given through a spinal tap. I was also prohibited from eating for 48 hours, but was using Itsa in the meantime. My weight has gone down to 86 lbs.

My husband is in Omaha to retrieve the rest of our things, and he was supposed to leave for the return home today with the truck but was stopped by snow. We don’t know yet when he’ll be leaving. In the meantime, Mom has been staying with me at the house.

That’s all for now, as always thank you for all your support!

Staying Out of the Hospital

I’m just posting a short update today, starting with a little bit about my health: I have been feeling very weak and fatigued and am barely able to eat, but Itsa has been helping me get some nutrition anyway. The dry heaving and the nausea are still there, but it’s been getting better.

I’m happy that I’m no longer in the hospital, I’m glad to be home and that my husband is taking very good care of me in my weakened state. Shoutout to my grandmother, as she has been trying to come and see me but she’s too sick—I love you and miss you, Grandma!

I am also very thankful for and to my mom: she did grocery shopping for us, brought me food, and takes me to all my appointments. Aunt Ellie came over today as well, and brought some excellent candied sweet potatoes (made from scratch!) and some beef stroganoff.

Two things I’m excited for: first, I just got a brand new desk, which means more room to put more stuff on for my little personal sanctuary. Second is pretty big news: my husband is planning a trip back to Omaha on the 9th or 10th of October to get the rest of our stuff, including my car! It will be a great relief to have our things here.

So far, so good, and some pretty exciting things to look forward to. I am taking baby steps towards getting stronger.

Thank you for reading, and for your love and support!

The Good Things

My last post was a bit depressing, as I wanted to paint a good picture of just how sick I am and how dire things are. There are some good things that I failed to mention which are deserving.

Since the move, we have been getting food delivered 3 days a week through my mother’s church. The food and the people have been amazing! They’ve gotten us quiche (three different types, all delicious!) a lot of casseroles, which are easy for me to eat, and a lot of fruit and good desserts too.

One of the best things is, living down the street from my mother has been priceless. It’s taken some of the load off of my husband. She lives about an hour away from the hospital but she’s always willing to drive us there. Thankfully she’s able to take off work, usually with little notice even, to do just that. Yesterday she and my husband had to drive all the way back home to get some of my medication that the hospital didn’t have.

I was also happy to receive the warm and fuzzy welcome that my cats gave me when I came home last week. One cat missed me so much that he hogged my lap for a long time and none of the other cats could come close! The kitties have adjusted very well to the new place. They seem to like it a lot more and they’re getting along better with each other. We’ve also had fewer accidents outside the litterbox.

I’m also thankful for my online friends. I managed to play some video games online with them last week.

My friend Dee has been such a blessing. Last week she was able to come over and spend some time with me, even spending the night a few times. I’ve also had some family visit me as well: my Uncle Jim, my Aunt Donna, and my Aunt Ellie. Aunt Donna brought me some apple cake she baked, and it was incredible, one of the best things I’ve ever had!

Rummaging around in my closet, I found some giraffe socks my mom gave me last Christmas that were very fuzzy and warm and they even go over my knees. I was wearing them when I went to the hospital recently and everyone agreed they were awesome.

Speaking of, I was back in the hospital Thursday night. I started having a headache, dizziness, nausea, and vomiting last Sunday, and it continued to get worse throughout the week. My doctor ordered a CT scan on Thursday. They over sedated me in the ER before the CT scan, and when I woke up I could barely breathe. There is no reason for the shortness of breath, everything checks out just fine, so we think I just need to get the medications out of my system. I was just under observation, but I start to feeling right until yesterday. Thankfully it is a beautiful day of light rain and smells of grass and flowers.

As always, thank you so much for your love and support, it means a lot and gets me through this!

Not dead yet

Where do I begin?

Short version:

We made the move okay although we’ve barely unpacked, still have a lot of boxes untouched. We had to temporarily leave behind a truckload of mostly my husband’s business equipment in Omaha, and a car.

Unfortunately my husband has been unable to work as his equipment is still in Omaha, so I will need to beg for more financial help to get the things here—most importantly the tools and machines we need to maybe get some income flowing back in.

I have also been in and out of the hospital for the past two months and very close to death.

And now for the long version:

After two months of preparation—two months which were not enough—we made the most difficult move I’ve ever done in my life. It was frustrating to not be able to get up and pack my stuff myself, as I was always struggling to breathe whenever I tried to get up.

The drive to Pittsburgh was very difficult, and not helped by the fact that our family includes six cats and one snake. I arrived on June 25th after 18 hours of straight driving, only stopping over a few times for gas. Since my husband was finishing things up in Omaha and wouldn’t arrive until a week later, I had a good friend of mine who was kind enough to drive me. My mom stayed with me at the new place until my husband caught up.

The first time I went to the hospital was about two weeks into the new place, and it was because of a collapsed right lung with a pneumothorax. I first went to a hospital close by but then was later taken by ambulance to my hospital, where I would spend seven days. During that time, my pain medication was switched to a patch, and it worked very well. However, another week later and the patch started giving me vertigo. I couldn’t keep my food down so I lost a lot of weight and I am now 40 lbs underweight. I was sick with vertigo for almost two weeks before finally getting an appointment with a pain specialist. They took me off the patch and replaced it with capsules that I had to open and take in mixed with applesauce, which worked well—though my throat problems made it extremely difficult to swallow. With all the pills, food, and drink, the throat issues put me at risk of aspiration.

The second hospital stay started on Sunday, August 12th, and I was discharged on September 12th, Wednesday. Although I had no pain, I still had shortness of breath. This was for a new occurrence of pneumothorax in the same collapsed lung. I spent four days in ICU before I could be transferred to the leukemia unit.

The time I spent in that leukemia unit was probably one of my favorite hospital stays ever. I was so bad off that I could not move my body on my own, but my super attentive nurses would reposition me, fluff my pillows, move me around—it was amazing! Several of them agreed I needed ICU levels of care, but they really took good care of me.

It was my favorite hospital stay, but also my most difficult one in a lot of ways. I had five chest tubes inserted (one of which is still there) and I almost suffocated to death. Thankfully, my body is not ready to give up yet! My doctors and I were not sure I was going to make it home. When I started to improve and kept on improving, it was more than a little surprising. By the time I came home, I had improved enough to be able to stand up and shuffle along with my walker.

During my month-long hospital stay, I made a new friend: my feeding tube! The feeding tube’s name is “Itsa” and it goes directly into my stomach. Itsa has allowed me to worry a lot less about aspiration when taking in nutrition and meds. I was down to 88.8 lbs when they weighed me at the hospital, but Itsa has helped me gain some weight back (I haven’t checked but I should be in the 90’s by now). Itsa was placed in during an endoscopy, which we had been wanting to do anyway, and we were informed that that was the time to put a feeding tube in so we took the opportunity. I have had no problems at all with Itsa, and it has just overall made life easier for me.

I’ve been home from the hospital for less than a week. I am on countless medications for my lung, and Itsa has been helping me out a lot with taking them, and yet I still have a lot of difficulty breathing. The house that we’re renting does not have central air conditioning, so we just got a used air conditioning window unit that we hope will help.

For now I am taking baby steps toward getting better. I’ve had to adjust my beat to the tune of my body, and soon I hope those baby steps will become a little dance.

If you would like to help me dance again, here is how:

I need babysitting, someone to sit with me and tend to the little things like getting me food or drink, etc. This will free up my husband’s time and allow him to finally unpack for one, and for another let him get back to work once we get his business equipment. We need this at all hours of the day, so any available time you have that can be spent with me will be very helpful.

Regarding getting my husband’s work equipment back, we also need approximately $ 2,000 to get our things from Omaha to Pittsburgh. I also need new sclera lenses, as the ones I currently use are so scuffed up that my vision is foggy through them, and the recent polishing they got didn’t do them much good. Since my eyes require the lenses to be in all the time, I need a second pair to swap out and keep my eyes clean and clear. The lenses are $ 800 per pair as they are custom fit.

As usual, my blog update is long overdue. I would apologize, but there was not a way that I could have posted this any sooner. Thanks again for all the love and support, and a HUGE thanks to my friend Stephanie who typed most of this for me!! :)

Big changes: moving, treatment, everything

As usual, I am making this post much later than I wanted. I’ve had family & friends visiting a lot over the last few weeks, have been very sick, and have been inundated with appointments.

Treatment: I’ve gone through 3 rounds of IV chemo (5 days, 10 days, 5 days), and a few weeks of a chemo pill. I’ve had multiple injuries, infections, antibiotics, vomiting sessions…I’ll spare the rest of the fun details. The good news is that I appear to be cancer-free at the moment, though there are likely some “bad cells” hiding out somewhere. I begin a 4th round of 5-day IV chemo on the 18th. I’m also now on oxygen 24/7 after my lungs continued to get worse, partly due to more pneumonia.

After that week of IV chemo, we are moving back to my home town of Pittsburgh, PA! My husband and I are completely exhausted, and we just can’t do this anymore. We are slipping…missing meds, missing appointments, late to every appointment, and just completely unorganized and behind on everything. I have a small army of a family that can take many burdens away and allow us to focus on what is most important: healing our bodies and minds. Switching hospitals at this point in treatment with such a complicated history is a nightmare, but it will have to be worked out. Most likely, I will stay on some kind of regular IV chemo regimen to keep me in remission. I will continue to need treatment for the GVH (Graft vs Host) problems I have.

A huge thanks to my friends and family here in Omaha and in Pittsburgh. My family is trying to raise enough money to make this move happen. Once again, I ask that if you have the ability to make a donation, please do. There is a GoFundMe link at the top of each blog page. I have used prior donations for dental work and specialty lenses, but I really need help getting home within the next couple weeks. I am immensely grateful for everything that has been donated, and amazed at the amount that I have received. Eyes and teeth are very important!

I will post another update as soon as I am able to. In the meantime, stay frosty :)

As if things weren’t complicated enough…

Today’s blast percentage (percentage of leukemic cells in my blood sample) is 79, down from Friday’s 88%. I did not receive any transfusions today. I’ve created a chart below for easier tracking.

My case manager called this afternoon & told me that instead of seeing my cancer doctor on Thursday that I will be seeing her tomorrow. We are also starting day 1 (of 10) of round 2 of chemo tomorrow. I also have the Visiting Nurse Association coming to the house tomorrow morning to begin physical therapy at home (yay!) and after chemo I have another nurse visiting me in the home (my insurance company’s House Calls program).

Wednesday we pick my Dad up from the airport in the morning (yay!), then it’s off to the hospital for bloodwork, an appointment with Infectious Disease (follow up on the legs), chemo, and a couple friends are coming to the house that evening.

I have all but 2 days booked through the end of the month, and it’s all subject to change at any given moment. As my Case Manager says “With Leukemia, we are always flying by the seat of our pants”. I am trying very hard to keep up. I really hope this next round of chemo gets the disease under control without killing me.

Percentage of leukemic cells in my blood samples:

Friday’s numbers, Saturday’s breathing

The percentage of leukemic cells in Friday’s blood sample was 88%, up from Wednesday’s 77%. I also got a platelet transfusion.

Saturday was probably the most difficult day I’ve had where my breathing is concerned. I could barely move, and laying down was almost impossible.

Today the breathing is better, and I was able to do some very light tidying around the house.

The bloating/swelling is still pretty bad, mostly in my hands, feet, legs & abdomen. I now have 2 pair of shoes/boots that I can wear. They are a full size larger than what I normally wear, and are still a bit uncomfortable with all the foot swelling.

Going forward, I have labs Monday, Wednesday & Friday scheduled, and a few other appointments. Hopefully that magic number decreases.

Friday 4/6: 81%
Sunday 4/8: 82%
Monday 4/9: 82%
Tuesday 4/10: 79%
Wed 4/11: 77%
Friday 4/13: 88%

More tests and bloodwork

Short version: I’ve felt pretty horrible the last couple days, and have been sleeping a lot. I got some blood yesterday, which helped a little. The amount of cancer in my blood has decreased slightly, which is good. We’re just watching & waiting until we can do the next round of chemo.

Long version: I had bloodwork Tuesday & Wednesday. When I woke up Wednesday morning, I knew my hemoglobin was low because I could barely breathe, and had no energy. It was difficult to even hold my head up. My counts continue to go down, so I am getting transfusions. I got blood yesterday, and most likely I will need platelets tomorrow. Here are the numbers for the amount of cancer in my blood:
Friday 4/6: 81%
Sunday 4/8: 82%
Monday 4/9: 82%
Tuesday 4/10: 79%
Wed 4/11: 77%
I go in again tomorrow for more bloodwork. It’s been difficult to get all my pills in because I am sleeping so much, but we are trying our best. Tuesday I had 4 appointments, which was very exhausting. Here’s an update on those:

Infectious Disease says that I have a staff infection in my lower legs, mostly due to the massive swelling allowing bacteria under my skin. They feel that 3 antibiotics is sufficient, one of which targets this type of infection.

Walking test: My oxygen level during my walking test was 99 to 100%. I became so short of breath at one point that i was gasping for air & had to sit down. The insurance company won’t approve oxygen with this high level of blood oxygen, and I’m told that even if I did get oxygen, it wouldn’t do anything because there aren’t enough red blood cells that aren’t already saturated. There is nowhere for the oxygen to go. This is very frustrating, because I am obviously having trouble breathing but there is nothing that can be done beyond what we are already doing (pills, inhalers).

Therapist: It was so nice to see my therapist. I hadn’t seen her since my cancer came back. I will continue seeing her once a week while things are rough, and she has some great ideas for things that we can work on that will cut down my stress.

I already mentioned the bloodwork results above. Hopefully tomorrow’s bloodwork shows good things, and hopefully I feel well enough to post an update about it.

What’s next? We have options…

I had an important appointment with my cancer doctor today.

Short version: We will begin another longer round (10 days) of the same chemo drug as soon as possible, then play the waiting game again. We may use another drug with the 3rd round of chemo if needed. My doctor will work hard to make sure I get oxygen, as breathing was a major problem during this last round of chemo.

Long version:

I have 2 new gene mutations:

The NRAS gene, found in about 10& of patients with my type of cancer. There may be some clinical trials, but most of the time the trials are for patients with an organ cancer, not blood cancer.

The SMC3 gene, found in about 1% of patients with my type of cancer. This gene has an antibody therapy called Mylotarg that can be used either alone or with chemo. We plan on possibly using it with round 3 of chemo. Normally there are 2 doses, given on day 1 and 5. I will need to be in the hospital for a couple days with each dose in case I have an allergic reaction.

The chemo pill I started last Friday is to hopefully bring down my white cell count, which is high (this is not good and is directly associated with the disease). It will bring down my other blood counts as well, like with any chemo drug.

Once my blood counts stabilize, we will plan on doing 10 days instead of the previous 5 days of the same chemo drug. This could be any day.

My doctor confirmed that unless we can get this under control, we aren’t talking about months that I have left.

My doctor is going to do whatever possible to get me on oxygen. My body’s biggest problem with the chemo was that I could barely breathe for a few days. I feel like I could tolerate a harsher chemo drug if I could breathe better. I have an appointment tomorrow to do a walking test. I will have to use an assisted device (rollator) for the test. Hopefully I can walk fast enough for my lungs to show how terrible they can be. I also have an appointment tomorrow with Infectious Disease to look at my legs. I will also get more bloodwork tomorrow, and I have my first appointment with my therapist since my relapse…it will be a fun talk.

I plan on getting another update out tomorrow on bloodwork & the walking test. Hopefully no additional drama is thrown my way in the meantime.

The storm is here, and getting worse

Short version: I began to feel terrible Monday April 2. I’ve had small spurts of good times, but I probably haven’t had a full good day since then. I’m very fatigued and retaining a lot of fluid, therefore I can barely stand or wear shoes. I still can’t wear pants because I’m so swollen in the torso. My breathing has also been worse and I barely have an appetite. There is consistently more cancer in my blood as time goes on. I will have more news after tomorrow’s appointment with my cancer doctor.

Long version: The percentage of cancerous cells in my blood has gone from 16% (when they first found it March 1st) to 82% (today). I think we need a harsher chemo drug, which was needed to get me into remission the first time around. I So far, I’ve had 1 round of chemo (3/21 to 3/25), and I began a chemo pill this past Friday (April 6th). I have only needed a blood and platelet transfusion once, which is good. My white cell count is still high, which is bad. I meet with my cancer doctor tomorrow to discuss the gene mutation results (which she wants to discuss in person…uh oh), and to talk about what comes next. We don’t want to end up killing me before we kill the chemo. Since last Wednesday my swollen legs have been red for about 3″ near the ankles, and the tops of my feet. I’ve seen 4 doctors who all say they have not seen this exact thing before. i can’t tell you how many times I heard that, and 99% of the time it’s something bad. The redness has remained the same over these last few days. My legs and feet are very painful. My hands and wrists are very painful and swollen. I am swollen all over & can barely move. I’m starting to feel claustrophobic in my body, it’s quite horrible. I’m also feeling very panicked that I don’t really have anything planned for my death. Some notes here and there, a death notification form on the blog, some contacts in my phone. I feel more panicked the more those bad numbers go up. Things are getting pretty scary.

On a more positive note, I can’t thank everyone enough for all the well wishes, hugs (virtual ones too!), the stuff, and just everything. I truly feel loved and special!

Also, I am afraid that I will not get the glyph of my Warframe idol (*cough* Tavier) before I die…videogame reference. The person who I will my account to must be sure to earn it if I don’t :)